Hi to all thals ! :)

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Offline PositiveVibes

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Hi to all thals ! :)
« on: April 28, 2008, 10:11:22 AM »
Hi ! As u may see I am a very new member to this site but I like it very much and the way people help each other and share their thoughts and problems ..So, very briefly I would like to introduce myself- I'm Rozalina, from Bulgaria, 20 years old and I have thal major. As most of you I need friends with my problem because sometimes I feel very confused and very sad about my disease.. I do not know how I can manage it ... It was very different when I was a lttle girl and did not ask myself so many questions that can't find answers to them..
So, I'm here for 2 reasons:
    the first is to find more information and news since in Bulgaria we are a little bit isolated from many things
    And the second one is that I really need someone to talk with on some difficult days

    Thank you very much for your reading !

                                   
Rozitka

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Offline §ãJ¡Ð ساجد

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Re: Hi to all thals ! :)
« Reply #1 on: April 28, 2008, 10:34:51 AM »
Hi Rozitka,

:welcome to the family :welcomewagon

You've come to the right place to get all the questions that you have in mind.

Please feel free to share your story and ask about anything that you have in mind.
اَسّلامُ علیکم Peace be Upon you
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Offline Lyanne

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Re: Hi to all thals ! :)
« Reply #2 on: April 28, 2008, 11:18:18 AM »


    Hello! and Welcome Rozitka! Feel free to ask questions and hope you find all the answers and learn more about our disorder.Take Care!  :hugfriend
LYANNE :yahoo

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Offline PositiveVibes

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Re: Hi to all thals ! :)
« Reply #3 on: April 28, 2008, 12:12:17 PM »
Thank u very mych! I would like to share a big problem of mine to you and hope sb can help me to manage it. So.... I make blood transfusions every 3 weeks and I get 2 packs of blood but when I finish and go home.. after some hours or even on the other day I notice a problem with my eyes.The white part of my eyes became yellow and my docotor says "it is a hemolisa", (I do not know if I can say in in this way.) So.. i haven't remove my spleen and I do not want to. But in Bulgaria where I live there are very few people that have kept their spleens. So.. my doctor's doesn't know why my eyes start getting yellow after blood transfusion , but .. one of his opinion is that it may be due to my spleen.
The very truth is that in BG things are really bad.. we do not have even Ferriprox , or Exjdade. most of the people use desferal and very few( including me )manage to buy ferriprox from abroad.
My big question is : " Are there people whose eyes getting very yellow after trasfusion and is it very dangerous.. how they cope with it.. " And also.. I'm very interested in knowing is it necessary to remove your spleen at some age.. as in Bulgaria doctors say. Are most of you with spleens or not... please share with me..
Thank you
           
 
Rozitka

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Offline §ãJ¡Ð ساجد

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Re: Hi to all thals ! :)
« Reply #4 on: April 28, 2008, 12:33:59 PM »
Hi,

This (known as jaundice) happens due to excessive hemolysis (break up red cells) that happens in Iron overloaded Thals.

Actually when Red cells breakup the Iron goes to the Liver as excessive bilirubin in an effort to recycle that Iron to make more blood; but this is all in vain as our genes are messed up in this regard so, this yellow colored bilirubin (due to Iron pigmentation) is in excess in our blood stream that is visible in our eyes and some areas of the skin like the palm and sole of the feet.
Hepatitis makes this situation worse.

I've tried to explain this in simple terms according to my limited understanding.

I hope Mr. Andy can explain this in a more logical scientific manner. :yes
اَسّلامُ علیکم Peace be Upon you
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Offline PositiveVibes

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Re: Hi to all thals ! :)
« Reply #5 on: April 28, 2008, 12:44:04 PM »
Oh ..thank u very much for your answer...BUT  I'm not quite sure that u understand me :). my ferretin level is about 1 200 it is not good , but is not so high either. I also do not have hepatitis that makes the situation worse. So.. I have my eyes yellow after transfusion, but after a few days they are getting white again.. and everything is ok.. I do not know who is Mr. Andy that you mentioned, but I will be happy if I can talk with him and if he can help me.
And understand if it is due to my spleen as my doctor says . BTW where are you from..? Have you removed your spleen? 
Rozitka

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Offline Zaini

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Re: Hi to all thals ! :)
« Reply #6 on: April 28, 2008, 01:47:45 PM »
Hi Rozalina  :urwelcome

I really like your name  :biggrin Andy is the administrator of our forum and a very very knowledgable person,Sajid and me  both are from Pakistan,and no Sajid has not removed his spleen yet.

Take care.

ZAINI.
^*^Xaini^*^

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Offline Andy Battaglia

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Re: Hi to all thals ! :)
« Reply #7 on: April 28, 2008, 03:12:59 PM »
Hi Rozitka and welcome to the group,

The word your doctor used is hemolysis, which is the break down of red blood cells. This happens after transfusions as the body begins to break down the freshly transfused red cells. If your spleen is enlarged, it is a sign that your spleen is overactive and breaking the red cells down even faster. If your spleen is not severely enlarged, there is no reason to remove it. If it is quite large, then there is a risk of the spleen rupturing, which is very dangerous. The size of your spleen is easily measured by a physical examination by your doctor. Has your doctor told you your spleen is enlarged and if so, how big is it? If your spleen was causing a serious problem, I don't think your blood would last three weeks between transfusions. The yellow in the eyes is bilirubin, which is the product of hemolysis. Using only packed red cells can limit this reaction. Proper matching of the blood antibodies can also reduce this. The use of a cortisone drug, such as prednisone can also reduce this reaction. Since your blood is lasting three weeks, I do not think the problem is severe.

Removal of the spleen is often a standard practice with thalassemia, but the results have not been consistent. It does help reduce transfusion frequency for some patients, but not all, and in some where it does, the frequency eventually becomes the same again, and the result is that removal of the spleen gave no long term help. I do feel that the spleen should not be removed unless it is seriously enlarged and presents a danger.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Hi to all thals ! :)
« Reply #8 on: April 28, 2008, 03:25:52 PM »
Hi Rozalina,

Welcome!  I am the mother of a 9 year old thal major. 
Andy is our guru, and his advice has helped many of our members, including my son. 

As Andy has said, removal of the spleen is not necessary in thalassemia - and may be futile in some cases.  Of course
a dangerously enlarged spleen would need to be removed. 

You may also want to look into supplements (which are discussed in many places on this site) - such as IP6, vitamin E, vitamin C (1/2 hour after desferal is on), calcium magnesium, folic acid, wheat grass etc.  These supplements are likely to enhance you well being - the effects are slow and cumulative but they do work. 

I think your ferritin level seems quite good to me.  All the best and welcome to our site!!!!
 :welcomewagon :welcomewagon

Sharmin

Sharmin

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Offline PositiveVibes

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Re: Hi to all thals ! :)
« Reply #9 on: April 28, 2008, 03:56:56 PM »
Oh if I have to be honest I did expect to write to me so fast and I am very happy to this and would like just to say "thank you for you kindness!".
I see that Andy is a very good person, who helps so many people and .. I admire him.
As far as my problem is concerned, I do not have enlarged spleen .. and beforesome time when I was examined doctors told me that it has quite a good size for having thalassemia..
I  take some pills- Dehidrocortizone when I finish my blood transfusion.
And I really hope that this problem with my eyes will disappear soon , because I remember it was happened to me a few times when I was a child...  and then I was ok. :)
I just want to see your opinion for my spleen and I'm happy that you think it's better people keep it as long as they can.
 
 
Rozitka

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Offline PositiveVibes

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Re: Hi to all thals ! :)
« Reply #10 on: April 28, 2008, 04:10:15 PM »
Hi Rozalina,

Welcome!  I am the mother of a 9 year old thal major. 
Andy is our guru, and his advice has helped many of our members, including my son. 

As Andy has said, removal of the spleen is not necessary in thalassemia - and may be futile in some cases.  Of course
a dangerously enlarged spleen would need to be removed. 

You may also want to look into supplements (which are discussed in many places on this site) - such as IP6, vitamin E, vitamin C (1/2 hour after desferal is on), calcium magnesium, folic acid, wheat grass etc.  These supplements are likely to enhance you well being - the effects are slow and cumulative but they do work. 

I think your ferritin level seems quite good to me.  All the best and welcome to our site!!!!
 :welcomewagon :welcomewagon

Sharmin


Hi Sharmin and thank u again! I' m taking all these pills that you adviced me , but I do not know only IP6.. what is it? May be in Bulgaria it is called in another way .. I don't know..
And I would like to ask you about the wheat grass that u mentioned.
I bought wheat grass in the form of pills 3 years ago  and I took it 3 times a day for some period.. but I did not notice any change in my hemoglobin or blood test .. then I finished the pills and decided not to buy another one ... now I am wondering if it worth taking it and how exactly it should be used to have results. Are there people who make their transusions less frequent?
Rozitka

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Kathy11

Re: Hi to all thals ! :)
« Reply #11 on: April 29, 2008, 12:33:30 AM »
Welcoming
Abpeltz  and Rozitka ,
May you find answers :welcomewagon :welcomewagon

Kathy

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Offline Andy Battaglia

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Re: Hi to all thals ! :)
« Reply #12 on: April 29, 2008, 01:56:35 AM »
According to Dr. R. K. Marwaha who did the famous study of wheatgrass in thalassemics,  it can take a full year to see the effects of wheatgrass. Some thals will show an increase in Hb and and will have fewer transfusions but some don't show any measurable effects. However, most do say that their immune systems function better and that they have more energy with wheatgrass use.

IP6 is a member of the B vitamin family and is also known as Inositol Hexaphosphate or phytic acid. It is found in every cell in the body. It is derived from the bran of grains and sold as a supplement in health food stores and from online vitamin companies. It is a natural iron chelator, as is green tea extract. Both can be used to supplement your chelation drugs. They will not replace them. Both are also powerful antioxidants which can help prevent damage to cells from iron.
Andy

All we are saying is give thals a chance.

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Offline PositiveVibes

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Re: Hi to all thals ! :)
« Reply #13 on: April 30, 2008, 11:02:31 PM »
Hi Andy! I'm very happy to share with that  gastroenterologist  examined my spleen and liver manually and through echograph and the results were very good. he told me that my spleen is not enlarged at all and he also emphasized that my spleen has normal size almost as a healthy person. I am really pleased with this but now my worries is about my next transfusion and the potential reaction I may make. that is why I would like to ask you if you have some experience in such problems as mine and what kind of blood tests my doctor can take me, in order to find antibodies againts red cells. I would add that The blood  I receive every 3 weeks is selected by antigene formula and is also filtered( without leucocites). Do you know what else the doctors can make in order to select the best blood for me and thus to prevent any reactions.
Thank you!
Rozitka

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Offline Andy Battaglia

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Re: Hi to all thals ! :)
« Reply #14 on: May 02, 2008, 02:59:01 PM »
Hi Rozitka,

I have spent two days reading about blood matching and found that the current direction of research has been about replacing phenotyping of blood with genotyping because using genotypes can lead to a much closer match than the traditional phenotyping has. I don't know where this is available yet, but there is a movement in Europe to make genotype matching the standard. I posted about all this at http://www.thalassemiapatientsandfriends.com/index.php?topic=1660.msg13941#msg13941

I hope some of this information can be of help. Taking less blood per transfusion and at a slower rate may be of some help. Genotype matching should be an important help once it is widely available. For your own case, watch how you react to further transfusions. I suspect that your recent transfusions did not match as well as they have in the past and this may be related to the reactions you have experienced.
Andy

All we are saying is give thals a chance.

 

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